Baths helped loosen and relax Erin Millikin’s muscles. They were therapeutic. When they were taken away, her health declined rapidly.

Millikin, who was diagnosed with muscular dystrophy at the age of eight, was a client of Saskatchewan’s public home care system for more than 25 years.

Now 43, she needs home care visits seven days a week. For years, staff provided three baths each week, which were three-hour appointments. Because she has a lift, those visits required two home health care aides.

Millikin is one of the 44,240 patients who used provincially funded home care services in 2016-17. Home care staff provided 1,781,890 units or hours of service. Clients pay $8.20 per unit/hour for the first 10 hours each month. After that, the hourly/per unit rate is based on the patient’s income.

In October, Millikin was assessed and home health care aides were instructed to switch her to sponge baths in bed. Since then, she has been asking home care managers why the decision was made and what the assessment found.

Erin Millikin, who has muscular dystrophy and requires the help of home care, at her home in Saskatoon on February 1, 2018.Liam Richards /
Saskatoon StarPhoenix

Muscular dystrophy causes her muscles to tighten when she is cold, and the baths helped to counter that. After she was switched to sponge baths, she felt cold all the time and her muscles started to seize to the point she was in pain, Millikin says.

Last fall, her right leg seized so badly that she could feel something wasn’t right with her knee. It had to be wrapped in a tensor bandage. By Christmas, her sister decided to get her back into a tub.

In the water on Christmas Eve, Millikin tried to move her leg and her knee snapped. An x-ray on Boxing Day showed she had fractured a bone in her knee. Her muscles had atrophied, leaving the knee fragile.

“What they take away has ruined me physically. I’m just not as strong as I was. I’m getting weaker as the days go by, because everything’s so seized. It’s so sore,” she said in an interview.

Because her muscles seized, home care workers now had to do more things for her, like brush her teeth.

The track system in the home Erin Millikin.Liam Richards /
Saskatoon StarPhoenix

In the new year, the home care plan was finally presented to her and she was given a deadline of Jan. 31 to respond. Millikin shared the text of the plan with The StarPhoenix.

It called for sponge baths in the bathroom twice a week. They would continue to be sponge baths rather than baths in her tub if the “recommended changes in the bathroom were not made,” the plan stated.

Her time with home care workers would be reduced to around an hour per day, and the total time per week would not go over 20 hours.

If a home care client lives with family, they are encouraged to take on more of the care, Millikin noted.

“I understand that they want that, but the reason we have home care is to give my family a break. I only get it once a day. To ask my mother, my sister or my father to do all the care and just have home care come for that one hour, what break are they getting?”

Erin Millikin, right, and her mother Marilyn at their home in Saskatoon on February 1, 2018.Liam Richards /
Saskatoon StarPhoenix

At one point after her daily visits were reduced to an hour, the workers didn’t have time to get her dressed and out of bed for four days in a row, she said.

She was also told she needed to get clothing that was essentially backless because she is physically unable to roll over onto each side to have her clothes put on.

Millikin said she felt she had no choice: she saw her options as either staying with home care, which could mean spending every day in bed, moving to a care facility or accepting individualized funding. In May, she planned to move to individualized funding.

Individualized funding is a government program administered by the Saskatchewan Health Authority. People who are eligible for home care can apply for funding. If approved, the person or their guardian is in charge of administering the money, arranging and managing their own services.

“I think I will be healthier,” Millikin said. “Since this has all started and home care has taken away all the care, I feel my health has deteriorated. So, I think it’s good to hire my own staff, to where I can have a bath and not have to worry about running over the time. And I think my health will improve.”

Millikin has created her own business, with bank accounts, Workers’ Compensation coverage and approved funding to pay the home health care aides she’s hired. She will essentially be doing the work of managers in the provincial health care system — scheduling, handling employee vacation coverage and making staffing decisions.

Millikin said she has received advice from another woman who is already using individualized funding, and she plans to “pay it forward” by helping others who are interested in moving to individualized funding.

By mid-May, Millikin’s original query about why her baths were taken away remained unanswered. She has also taken her question to the provincial ombudsman.

The number of patients using home care in Saskatchewan has been steadily increasing, from 40,922 in 2014-15 to 43,104 in 2015-16 and 44,240 in 2016-17, according to Ministry of Health statistics.

The provincial Ministry of Health says the increase could in part be caused by a jump in the number of people who need home care for a short period of time.

*****

If it wasn’t for home care, Saskatoon resident Crystal Normand says she and her infant son Leo would not have been able to come home — but they also wouldn’t have been able to stay in a hospital.

“I honestly don’t know where we’d be if it weren’t for them,” Normand said.

Leo, born in December, was diagnosed with epidermolysis bullosa, a rare condition that causes the skin to be extremely fragile. The condition came to public attention in recent years through media reports about another Canadian boy, Jonathan Pitre, who died last month.

Normand said Leo needed extensive wound care and was born without pieces of skin on places like his feet. Friction causes blisters and lesions to form on his skin. There is no cure.

Home care aides have helped Normand and her fiance protect Leo’s skin, providing them with medical supplies and figuring out what will work best for him.

More recently, she and her fiance have been taking over, with the care aides visiting to support them to ensure they’re taking care of his bandages correctly.

“But they tell us ‘enough,’ and (that) we’ve figured out enough that we’ll be able to do it on our own,” Normand said.

She hasn’t been given a time frame for how long they will continue to receive home care visits.

“You can tell, though, that there’s quite a bit of pressure — top down — to get phased out of the system,” she said, adding that she’s been told to be prepared for when they have to do things on their own.

“They did kind of say, ‘We’ll never leave you, if you can’t do it we will come and we will help you.’ But in terms of time spent and when you’re getting supplies, you can tell there’s just that little bit of crunch that they’re being really, really mindful of all of their resources, whether it be staff or materials.”

*****

After Saskatoon resident Wendy Carnegie fell and broke two fingers on her right hand and a broken left humerus and injured left shoulder, she was unable use either arm to do things for herself, like preparing meals, getting dressed and washing.

“I’m finding the system to be really, really hard to navigate,” Carnegie said.

Her doctor sent a referral on March 2. By the time she spoke with the StarPhoenix in late March, she had not met with anyone but care aides. They were her main sources of information about the home care program, she said, describing them as “wonderful people.”

“It’s not the aides themselves that are a problem,” she said.

Carnegie said she found the system overall to be “cumbersome.”

In May, she spoke with the StarPhoenix again. She said was told initially that it would take four to six weeks to get an assessment. However, she only needed home care for nine weeks while her injuries healed. Without an assessment, care aides could only give her sponge baths, although it was clear she was capable of showering with someone present to listen in case she fell in the bathroom.

Carnegie ended up turning to private care, a friend and family members who came in from outside Saskatoon.

“In my opinion, someone always needs to be there to advocate for that person that’s going to need the home care system,” she said.

*****

Every day is a rush, says licensed professional nurse Charlene Sarafin. For her, working in home care is a passion.

Sarafin has worked in home care as an LPN for 23 years, mostly in Saskatoon. Her role is mainly to assist home care patients and staff via telephone. New clients come into the system every day and the office is short-staffed every day, so workers have to rush through care, she said.

This leaves Sarafin doing “band-aid” work, dealing with clients calling in if something comes up between visits by front-line workers.

Sarafin walks clients through trouble-shooting problems, such as a blocked catheter or incontinence. If the issue can’t be solved, front-line staff are called to make a visit — but sometimes, family have to be called to help instead.

The situation is hurting staff morale, she said.

Home care is important because it takes pressure off acute and long-term care facilities, Sarafin notes. Clients essentially pay for the cost of infrastructure, because care is provided in their own homes.

“We’re just going in there and providing the care. It’s a real savings and people want to be in their own homes. Nobody wants to be in a hospital. Nobody wants to be in long-term care. We can make that happen, and it’s affordable. But you have to invest in the people to provide the care,” she said.

Barbara Cape, president of SEIU-West, which represents licensed practical nurses, front-line health aides and schedulers, said patient appointments are being scheduled to the five-minute window.

That puts pressure both on the workers and their clients.

“It’s an absolute rush — and I don’t mean that in a good way, but I mean that in a hurry-the-hell-up way — for home care aides to provide the care their clients in the community not only pay for but need.”

Part of the result of that pressure is that workers may be injured and have to take time off, Cape said.

“The interesting thing about home care is everyone thinks it’s the panacea that’s going to fix wait lists and overcrowded hospitals. That’s a great idea and I think that’s something that we really need to invest in, and that’s the problem.”

*****

According to statistics released by the Ministry of Health in response to an access to information request, there have been a total of 1,451 complaints about home care between Jan. 1, 2011 to Dec. 31, 2017. Consistently, access to service, delivery of care and communication have been the three top concerns over that period of time.

During the seven-year period, the total number of complaints in a given year have been as high as 251 and as low as 185. The two top areas of concern overall during this period have been nursing and personal care.

Graham Blue, the director of home care in Saskatoon, and Suzanne Mahaffey, the executive director of primary health care in Saskatoon, said home care front-line workers and managers have daily “huddles” to work out staffing.

Home care managers meet at the beginning of the work day at 9 a.m during the week, when they look ahead at the assignments and figure out how to cover absences.

At 6:30 a.m., front-line staff meet in the communities where they work to discuss their daily assignments, then advise managers about where coverage is needed. Workers in one local huddle are able to work in other areas, Blue said.

Mahaffey said home care management in Saskatoon tries to forecast what the needs will be in its yearly planning process to do human resource and budget planning. Day-to-day, staffing levels are “sized” to meet the needs of the client, Blue said.

From the “huddles,” Mahaffey said she learns about any problems that may prevent workers from visiting clients, such as a snowstorm. On weekends, there are no “huddles,” but there are managers on duty to work through staffing shortfalls, she said.

“We don’t maintain a waitlist for home care services because it’s not necessary and we’re proud of that.”

When there are cancellations, Blue said home care staff have discussions with clients to establish their backup plan for care.

“On a day where we can’t meet the needs of all of our clients, we prioritize clients that don’t have a backup plan, be it family, friends or others that can come in to provide their care needs,” he said.

Blue acknowledged there are times when they have to defer people who do have backup plans.

When asked whether hiring is done to match the demand for services, Blue said “our primary focus is not to just reallocate resources just because there’s a need,” but instead it’s on the quality of the work done in the Saskatoon service area, “to figure out how we can do the same or more work with our existing resources.”

Efficiencies within the system have been found in order to provide more units of service with a “very similar” amount of staffing, he said.

Blue said there is no pressure from managers on workers to move quickly or “push the visit along.”

Mahaffey added that they want staff to work safely.

“Working quicker is not our approach,” she said. “Some visits might be shorter and some visits might be longer; it’s based on a client’s individual needs.”

When there are concerns, they encourage clients to raise them with their client care representative, who documents the concerns. Blue said that office also ensures there is a timely response. If clients are not getting a response, he encourages them to contact the ombudsman, he said.

***

Millikin said there are great home care workers she will miss seeing.

“I just worry about other people that are scared to say something because they don’t want it to get worse. Really, it can’t get worse for me. I was left in bed for four days. How much worse can it get?”

She is concerned that people who literally cannot speak for themselves because of a disability won’t be able to hold anyone in the system to account if their service is cut the way hers was.

“I can (speak up), and I’m lucky that I can. But sometimes I’m not so lucky because it’s always like, ‘Oh, it’s Erin. Oh, she complains. Oh, she does this.’ No, I’m just fighting for my rights. I’m not fighting for anything extra. I’m not asking for 40 hours a week. I just wanted what I should have gotten: to feel like a human being. I just wanted some respect and some dignity,” she said.

“And they were slowly taking that away, and it was time that I said ‘No. Sorry, we can’t do this.”

Related

Correction: Due to a typographical error, Suzanne Mahaffey’s quote has been corrected to say: “Working quicker is not our approach.” The error appeared in the online version of the story only. The StarPhoenix regrets the error.

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